Patience a virtue for woman waiting on kidney

Monday

Mar 31, 2008 at 12:01 AMMar 31, 2008 at 5:13 AM

Susie Edwards is used to waiting. She waits for test results. She waits for insurance, Social Security and Medicaid paperwork. But most of all, she waits for the day the doctor will call and she’ll have to drop everything to go to the hospital. Edwards, 60, is on a waiting list for a kidney transplant.

Matt Hutton

Susie Edwards is used to waiting. She waits for test results. She waits for insurance, Social Security and Medicaid paperwork. She waits eights hours every night to be able to venture more than a few feet from her bedroom. But most of all, she waits for the day the doctor will call and she’ll have to drop everything to go to the hospital.

Edwards, 60, is on a waiting list for a kidney transplant.

“The waiting is probably the hardest part for me,” she said. “I’m not a very patient person. You can get discouraged with all the little things that go along with the medical commitments you have.”

According to the U.S. Department of Health and Human Services, at any given time more than 55,000 people are on the waiting list for a kidney transplant, with about 14,000 transplants performed each year.

Edwards’ troubles began 20 years ago, after she was given the wrong type of blood during surgery.

“I developed signs right after surgery,” she said. “I was on dialysis right after that because I lost kidney function. I did regain my kidney function, but since then doctors found both kidneys were heavily scarred and damaged, and they believe it was a result of that.”

In the last three years, the kidney problems have taken a turn for the worse, and she has been on the waiting list for a transplant for two years. She has no idea when a kidney might become available.

“It could be any day or it could be a year or two more, I just don’t know. When a match becomes available, you basically have to drop everything and go.”

While she could see if her children are a match, given the family’s history of diabetes she has not yet asked them to be tested.

“They have to look after their own life,” she said.

Edwards has not reached a critical stage yet, and she and her husband of 41 years, John, manage her kidney problems through at-home dialysis. While it used to be that dialysis had to be done at a treatment center, recent technological advances have made at-home dialysis equipment smaller and simpler.

Edwards had a catheter surgically implanted in her stomach that allows her to hook up to the equipment. When she first started the treatment, she did the process manually and was hooked up to an IV pole with a drip. She needed to receive the treatment four times per day.

“I had to limit my activities within that time frame,” she said. “It was easy to be shopping, lose track of time and then realize I had to get home.”

Now, she has an automated machine that does the dialysis for her over an eight-hour period, usually at night. While she’s hooked up to the machine, she can move only a few feet from the bedroom to the bathroom. But she gladly exchanges that restriction for the freedom to have the days to herself.

“It’s a lot nicer than having to be at a dialysis center three times per week,” Edwards said.

She goes through two six-liter bags of fluid each day, which cleanses the body by removing excess fluids, minerals and waste. The basement looks more like a medical storage closet, with boxes upon boxes of the solution stacked up. And while at first glance the equipment, tubes and machine look complicated, the couple said it’s pretty simple once you know what to do.

Of course, it doesn’t always go smoothly. John said once they had forgotten a step and the fluids did not drain. They were able to call the company who provides the medical equipment, Baxter Healthcare, and they were able to resolve the situation. The couple laughs about it now, but Edwards described that sensation as “a little uncomfortable,” though for the most part she doesn’t feel anything during the dialysis except a little cramping.

“It really is a very easy and convenient way to manage it if you have to do it,” she said.

The equipment itself is fairly portable and their provider can actually ship boxes of the solution to a destination. Still, if the couple takes a trip for a few days to see their children in Indiana, it requires a lot of packing.

“You take a lot of stuff with you, but you don’t bring a lot of stuff back,” John said.

She still has to see her specialist, who is out of Peoria, at the Midwest Kidney Center in Kewanee, about once each month. Having the center in Kewanee is good for Edwards because she doesn’t have to travel to Peoria each month.

Edwards said it has been family that has helped her survive this trying time.

“My husband has been very, very supportive,” she said. “He’s been willing to do whatever it takes to get me through this.”

However, the longer she has to wait, the more the medical bills begin to mount. So, some of her friends are hosting a benefit for Edwards from 11 a.m. to 7 p.m. May 17 at the American Legion, 571 E. North St. The event will feature an auction, food, music and raffles.

Edwards said before her situation arose, she never considered being an organ donor herself. Even though her disease will prevent her from being able to do so now, she wishes she could.

“It’s an epidemic,” she said. “(Before this situation) I didn’t even think about being a donor. I always thought, ‘what if I need it?’”

For more information on organ donation or to find out how to become a donor, visit www.organdonor.gov.

Did You Know?
More than 98,000 people are currently on waiting lists for organ donations. Everyday, about 77 people receive an organ transplant, but 19 people die each day waiting for a transplant.
Source: U.S. Department of Health and Human Services